Topic: Where Does Neuro Lyme Progress to if Left Untreated?
canbravelyme
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Member # 9785
posted
It's a distressing subject, I know, and I've tried to hide it in a number of threads, as to not draw attention to it.
But, as lymebytes in her post recently stated, "Maybe I'll just quit the abx and let the disease take its' course."
Where I "got" to in terms of pain and disability was not that far off as lymebytes.
But...dare I ask, how this eventually kills you? I have no doubt that mine could. And it wouldn't be a happy jolly one.
I apologize for the subject, but I'm a firm believer in knowing rather than sticking head in the sand.
I'll certainly understand if this post raises me to the esteemed ranks of the "Deleted Post Society"
xxooxx In Health and Well-Being to All,
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CaliforniaLyme
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-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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canbravelyme
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posted
Thank you Sarah for daring to broach the subject. I looked at that page last time I brought this up, and it seems to contain obits.
Do we eventually have a fatal seizure? What happens when the neuropathic pain which is already unbearable increases?
Perhaps few people have been able to tolerate the natural course of the disease, or doctors buried patients with "unknown causes".
Thank you Keebler for the pain management suggestions, though I think they were meant on the other post? I will look into them.
Anyway, I'm going to take care of the living right now and pet the dog who is needing attention and make my darling some dinner. Thank goodness I can with some care and treatment.
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Keebler
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posted
-
Ohhh, I did it again. I wrote a post but feel dizzzy - thought it unclear and tried to fix it . . .decided to just delete at the very time it was apparently being read.
So, it did have corydalis as a pain mgt. suggestion.
and, as long as we have garlic and olive leaf extract, we can at least hold down the fort.
To give up all together, well, the end would be different, I think for everyone, depending upon whch systms are most affcted now.
it wouldn't be pretty. now, stopping treatmnt with backup of the best nutrition one could do with what funds were avialbe
at least that would be some plan. Giving up is not a plan, it's just giving up.
Best of luck to all of us who get really tired of ths stuff. I think that changing just one or two things in one's plan might help.
posted
unfortunately, this is a slow painful death. it could take years.
believe me, I have thought of it. if I could be assured a quick painless death (I am talking less than a year) I would have gone that route a long time ago.
I believe if I stopped my pain meds I would die of intractable pain, but its a horrible death. I tried it and didn't last 4 days.
i actually looked into physician assisted suicide, and have not completely ruled it out.
if I didn't have a 18 year old son, I would have been gone long ago. this is a horrible, painful disease.
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bejoy
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posted
My understanding is that many people get a diagnosis of MS, Parkinsons, or dementia, and wait a long time for the disease to "take it's course."
I know its hard, but don't give up. Hang in there, and we'll hang in there with you! You can get better!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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canbravelyme
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posted
Hi Roro,
I too am glad you have an 18 year old son.
Hang in, it will get better. I was in excruciating pain 24/7 early this year. After 3 months of Bicillin, it was no longer 24/7. And that was without any pain meds.
My point in asking this question wasn't to say that I'm thinking of it, but more to know what the alternative would have been had I not received treatment. If I had listened to the local Lyme treating doctor, I would be without treatment right now. I fear to think what that would have been.
I believe with treatment this disease can be managed. However, it seems the majority of doctors think chronic Lyme doesn't exist. In my case, without any diagnosis (I know a psychiatrist as well as a psychologist who will attest that there is no way my issues are psychosomatic), I expect I would be left here to suffer until? It's horrible to consider, I know, but I do wonder what would have happened?
Thank G-d for ILADS is all I can say. And you guys, though I do wish for each and every one of us that we didn't need to be here, and are all soon leading healthful, wonderful lives.
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posted
Isn't it kind of like a spin of the roulette wheel?
Any system or organ pretty much can be effected.
I am guessing which ever major organ shuts down first could be it.
It's not a pretty subject, but one we all must wonder about.
Posts: 242 | From Mississippi | Registered: Oct 2006
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canbravelyme
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Member # 9785
posted
I'm glad we all must think about what the natural progression of the disease is. I felt badly for bringing it up, but it's nagging at me from time to time, when I consider to what point in physical suffering this disease took me prior to proper ILADS care.
xoxo to all
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't think death is that much of an outlandish or morbid
topic. We are all going to die some day. There are hundreds of
thousands of toxins in the environment. You could potentially
get ill from a number of them. No need to dwell on Lyme in
particular. My mother got lymphoma from black hair dye in the
1970's... Death can come from getting hit by a car or an
accident. Does that mean we shouldn't drive a car & sit around
thinking all the things that could happen from being in an
accident?
I feel it's best to try to hang in there as best as we can. If you
stop taking the abx you can try something else - like cat's claw
or artemesinin. You can always go back to it later. It's a long
process. You never know what new discovery they will come up
with in the future. I find meditation using an audio CD with
binaural beats really helps (like Dr. Jeffrey Thompson or Hemi-
sync). It's easy & quite relaxing.
I'm not sure getting a PICC line is the answer, either. Nothing is
100% & the PICC line sounds dangerous. A number of people
have ended up in the hospital with infections. I'll hold off on that
approach.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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daise
Unregistered
posted
CanBraveLyme?
Is that how you say it? I like that.
I think it's healthy for anything to be talked about.
I was in pain (and had mild Bell's palsy, self-diagnosed)--but not as much as you or roro or others. I had severe, constant headpain for three years. It is also tied into pain in my neck and shoulders.
I still have it, but it's minor now, compared to what it was--thank goodness. I'm in the middle of antibiotic treatment, including good supplements and watching my GI tract, my doc and I shoring-up my immune system and trying to eat right, plus Dr. Burrascano's excellent range-of-motion and then weightlifting prescription. (No aerobics: it's in his 33 pages of tips at ILADS.org.) I can't explain ...
... I can't tell you what all of this has done for my head. When I get done weightlifting I feel better! You get to sit down on the machines and work one muscle group at a time--perfect for exhausted Lymies. You lift what you can that doesn't make you grunt or be out of breath.
I feel better in my head--it clears, some--and its less painfull. I started out doing completely simple range-of-motion exercises at home. The exercises came from my physical therapist. I kept thinking: "This isn't gonna work. I'm just too exhausted. I need some kind of major help."
Do you exercise? I'm wondering where you're at in your treatment. Are you in a wheelchair? That's OK, weightlifting can be done, if nothing else, with dumbbells.
When I think of what it took to get through the worst three years of headpain ... I don't know. I took it one day at a time, I guess. Had to. I guess I'm just ornery enough to plow through.
Does "Darling" acknowledge your pain?
I'm glad you're getting an ILADS docs help. How long have you been in treatment? Are you herxing now? How long have you been ill?
Lyme and coinfections affects us differently. I don't think there is a "pat" answer to your question about neurological pain ... and giving up on your life, due to your pain.
If you're happy with your LLMD, if he or she listens to your signs and symptoms, and pays attention to your herxing patterns (do you have herxing patterns?) and is trying to figure any coinfections, and is attentive to your needs, head to foot (especially the GI tract,) that's great!
Are you able to sleep? That's a biggie concerning pain and healing.
But my "impression" is that if you are under the care of a good LLMD, then after that ... it's all about taking care of ourselves. Nice Lyme naps. I like to listen to ocean waves and whales music--it's calming and that helps the pain.
Including reaching out to others, as you've boldy done.
You don't want to die, you want to live. That's why you're reaching out.
But your pain. Is your doc trying to tend to your pain? Maybe you might bring up your pain with doc, again. And again. Have you told your doc what you have told us? I would encourage you to do just that. Call your LLMD, OK? Say: "It's unbearable."
When you want to quit or give-up, would you talk to "Darling" and come back to Lymenet? Bring your dog. Most dogs can sense things: they have love to give and a doggie way of helping our stress: a reduction in our pain. Or do you already know this?
What's kept you going in the past? Do that!
Please, never give up ... hang in there ...
Others have said similar things about their pain and they couldn't believe it: then they hung in there, repeated pleas to their docs for help for their pain, and then they got round to the other side of the Lyme beast. Now, they're thrilled to be alive!
I want that for you.
Think of what you named yourself as if it were a goal: CanBraveLyme!
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
First off, I would like to be clear here: I am not suicidal. Not even depressed, though like all of us, frustrated at times. And with respect to my "chosen name", after what I've been through for the past 4 years, here in Siberia's parking lot (Canadian Health Care System), I feel like I'm clear on "I can brave it".
I am sensitive that others on these boards are fighting depression, and all my best wishes are with you. This is one of the reasons I was concerned about broaching the subject.
I guess the answer to my question is that we don't know. But much better to never know and pursue treatment, with whichever modalities work for you. Like Lymetoo, there is far too much evidence of remission or cure with treatment to seriously consider for more than a moment it is unattainable.
With loving kindness: May all sufferings cease! May we all be well and happy!
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bettyg
Unregistered
posted
brave,
my dad had UNDIAGNOSED lyme from the age of 7-10 until he died short of 87! so basically 80 yrs with chronic lyme.
he had life-long health problems starting as tht young kid...could not move at all; juvenille arthritis.. his mom took him to mud srings, minn. for treatments, which got his body moving again..
twice in his life he was paralyzed from his neckk down; TWICE RECOVERD!
a cat has 9 lives; he had 27 lives! he should have been dead over and over.
he died of congestive heart failure, kidney failure, and his diabetes.
he had 2 aorta value replacements in his heart and i could go on and on.
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minoucat
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posted
I think I've seen LD at it's worst, and I've seen the comeback.
My husband was miserably ill -- seizures; intense pain from arthritis, neuropathy, muscle pain, and headaches; severe memory loss (couldn't finish a sentence, couldn't remember the previous day, couldn't recall ever being happy or not in pain)' severe emotional dysfunction (bizarre rages, obsessive behaviour, paralyzing depression); severe fatigue (some days, simply could not walk across the room). He couldn't sleep, he threw up several times a day, he was overwhelmed with anxiety at just the though of leaving the house....I could go on.
He was, in short, at death's door and he was willing to help things along a little.
He's had LD for at least 20 years, and had been treated by a number of well-meaning docs, some claiming to be LLMDs, some just trying to help.
For most of those years he was able to work and get by, although in bad shape, but eventually he got too ill to do anything. And I mean anything.
Four years ago we found an LLMD who really was an LLMD, and who treated us for the coinfections as well as Bb for the first time.
The hubby's not well, but his life is completely livable now. He's improved in every way. There are still major down days, and he's still being heavily treated with abx and supportive remedies. But he's himself again, he can think and plan, he laughs and has fun, he's not in pain daily. His life is hugely more limited than it was before the illness, but mostly he's glad to be alive.
I know how terrible living with this illness is. I know how discouraging recovery is. I know how hard some people have to work to get even minimally better -- and how unfair it is that others seem to cruise rather smoothly into recovery.
And I know that the traditional LLMDs fail some people, and how hard and how frightening and how costly it is to continue to find those people who can guide you back to some semblance of a livable life.
But I've seen it done, again and again -- sometimes with very traditional treatments, and sometimes with very outlandish ones. Often with a real mix of both.
I've seen what damage untreated or incorrectly treated LD can wreak, and I tell you from experience -- as hard as it is, fighting against it is better than not. Full recovery may not always be possible, what is possible is a good life, even if it is one with limitations.
I'm editing to say that I think you can coexist fairly well with Bb at a certain point, if complete cure isn't possible -- that's pretty much what I envision for myself and the hubby. But before that coexistance becomes livable, if you've become very ill, you need to have beaten the illness back a great deal and brought your body into to a good balance.
LD seems to bring out every inherent imbalance and weakness your body has, and those issues (like detox pathways or stress response) must be addressed in some way. Some people are much more vulnerable to these problems than others just because of their genetic heritage.
posted
My grandmother had Lyme disease since her childhood. She had exactly my symptoms. She never got treated and lived with it until age 89 when she died of a colon cancer operation.
A relative had Lyme since many many years - never got treated and eventually got the diagnosis Fibromyalgia. She died at 88. They did an autopsy to find out the cause of her death. They found that her small intestines had turned all black and had decomposed!
A neighbour woman had Lyme since her youth - never got treated. When I moved away she was in her late 80ies - so I don't know if she is still alive.
You can live very long with this disease - my grandmother found it was far too long.
What I find interesting is that both my grandma and my relative had gut issues - we should take good care of our guts!
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
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posted
To All- there is Lyme and there is neuro Lyme- they are different. People with ordinary (sucky horrible but non-neuro) can live out normal length lives but with horrible symptoms. Then there are the others- the Europeans call it NeuroBorreliosis and it is DIFFERENT than plain old Lyme. It is different.
Bravey, if you read the Obits and deaths reports (there are 5 pages now) you will find that suicide is high as a cause of death- and that is a complication of hte disease because it affects the brain- then you get the ALS/Lyme deaths- and THEN you get deaths from cardio related stuff, just a few here and there- but a bigger cause of death than that is
ANOXIC ENCEPHALOPATHY a NEURO LYME complication
NOT BRAIN FOG, not what 98.5% (that's a guess peoples, not a real number, I am guess-timating!!) of people on this board have-
If you are progressive neuroLyme you progress to true dementia type vasculitis which can literally starve the autonomic nerve centers of the brain- the ones that have to do with BREATHING- and you can just go to sleep- and never wake up- the brain just shuts off- not a bad way to go in some rspects- a gentle sleep- forever-
THIS IS NOT BRAIN FOG
This is NOT BRAIN FOG
This is not 98.5% of the people on this board. This is the minority of people who have true progressive neurological Lyme disease.
Like Glenn Edward Killion- Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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Member # 7136
posted
p.s. If you go to Pubmed and put in Borreliosis you will get ONE set of documents- and if you put in NeuroBorreliosis you will get ANOTHER set of documents- they are almost like two different diseases (and they may be, who knows, at this point)!(with all the coinfections left to be discovered*)!
What is intersting is that Babsesiosis causes this kind of anoxic change in tissues in animal studies so I personally think quite a few Lyme deaths are truly Babs- that's just my opinion, absolutely nothing verifiable or documented-
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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canbravelyme
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Member # 9785
posted
quote:Originally posted by CaliforniaLyme:
ANOXIC ENCEPHALOPATHY a NEURO LYME complication
If you are progressive neuroLyme you progress to true dementia type vasculitis which can literally starve the autonomic nerve centers of the brain- the ones that have to do with BREATHING- and you can just go to sleep- and never wake up- the brain just shuts off- not a bad way to go in some rspects- a gentle sleep- forever-
Thank you Sarah. I will look up Anoxic Encephalophathy. From what you are describing, I thought it was something like basically stop breathing, because I've experienced so many autonomic nervous system symptoms.
I'd heard it said that the #1 cause of death from Lyme is suicide, so the obits didn't surprise me.
I'm so glad I have Dr. S. now. I'm getting better, but I do shiver at the thought of where I was at before he began treating me, and clearly my suspicions of where this would end (autonomic shut down of lungs) is correct.
And I guess it would be fairly peaceful, if it wasn't for the INCREDIBLE neuropathic pain that accompanies the process.
I've got a healthy fear of the whole process that I touched, and am more clear on what the depths of suffering might look like. It's actually a hole that I avert my eyes from, more than anything.
With love, and healing to all, and all loving, healthful, lives,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Michelle M
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posted
Sarah has a very good point.
I have neuroborreliosis.
I am convinced that without treatment, I would definitely be either (a) dead, or (b) lapsed into a babbling kind of dementia (i.e., as good as dead.)
(*Yes, I know, it may SEEM I do a lot of babbling right now, but that's another story!!!!)
Neuroborreliosis resembles vasculitis on brain MRI. Lesions are numerous. Blood supply is short. Stroke risk is HIGH. To my mind, shored up by the few studies I have read (mainly on cadavers - eek!), much of this is babesia.
The good news (see! there's always some!) is that I do not suffer any -- and I mean ANY -- of the ills that many of you suffer with a more bodily presentation of lyme - such as pain, aches, swollen joints, etc. I can walk up to the top of Mt. Lassen right now (14,000 feet?) without blinking.
The bad news: Tomorrow I won't remember that did.
If you do not treat neuroborreliosis -- AGGRESSIVELY!!!! -- I am pretty sure you will die. If you do not treat neuroborreliosis complicated by babesia WA-1, you are truly toast.
If I had to order vet meds to save myself, I would.
If I had to order abx from overseas to save myself, I would.
I would buy Buhner's book and dive in and try an herbal protocol if I could not get antibiotics.
There is always a way -- somehow!!! Any way is better than not treating! LymeNet people may not always agree on the best way but it's an amazing resource for great ideas.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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map1131
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posted
I would bet it could possibly lead to.....alztimer's , dementia, wheelchair, be-ridden nursing home, ALS, MS and early death.
It's what keeps me searching and fighting.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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CaliforniaLyme
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Member # 7136
posted
Here, SOB if you don't do grim, but here are two autopsy reports from the memorial page-
They were found by me when the John Hopkins autopsy data base was open to the public (is no longer) and I foundby scrolling through thousands of autopsy reports so I have a grisly fondness for them, that moment of discovery, aha- you will not be forgotten my friend!!!
one is offically Lyme- the other is recorded as an MS death but you will note it has positive Lyme serology and is consistent with LYme-
I would put both of them in the Neuro Lyme category-
Case No: 7. Autopsy No.: #26488 Age (decades): 40 Sex: M Decade of Autopsy: 1990 Key Number: 26972 diagnosis multiple sclerosis age ;. progressive deterioration neurologic status requiring total care admission ;. intravenous adrenocorticotropic hormone ;. adjustment medications ;. phenobarbital ;. positive LYME serology ;. admission meridian nursing center hills ;. paraplegia ;. postural tremor ;. recurrent ;. coli urinary tract infection ;. aspiration thin liquids ;. increased difficulty swallowing ;. decreased oral motor control ;. five pound weight loss past six months ;. declining mental status ;. patient family decision gastrostomy tube placement secondary patient wishes against artificial life support ;. initiation comfort care only orders ;. discontinuation food fluids ;. elevated temperatures degrees ;. shallow respirations ;. apneic spells ;. decreased responsiveness ;. death hours ;. extensive multiple periventricular demyelinated plaques bilateral cerebral hemispheres cerebellum basal ganglia brainstem high levels cord ;. brain weight ;. moderate hydrocephalus vacuo ;. purulent material ;. bacterial overgrowth bronchi bilateral lungs consistent ;. aspiration ;. focal hemorrhage small foci acute bronchopneumonia apical posterior basilar bilateral lungs ;. combined weight ;. squamous metaplasia urinary bladder ;. cause death ;. multiple sclerosis ;.
Case No: 26. Autopsy No.: #46758 Age (decades): 70 Sex: F Decade of Autopsy: 1990 Key Number: 810547 appendectomy ;. hysterectomy ;. bladder repair ;. osteoarthritis ;. family history cerebrovascular accident cancer ;. tick bite ;. onset nausea ataxia right facial weakness ;. admission local ;. diagnosis LYME disease nervous system ;. elevated serum cerebrospinal fluid igm igg titers borrelia burgdorferi ;. intravenous ceftriaxone ;. transfer progression cranial nerve deficits ;. lyme disease ;. secondary bell palsy cerebellar involvement ;. right lid lag ;. heberdeen nodules ;. elevated serum cholesterol ;. aspiration pneumonia ;. pleocytosis ;. mononuclear per lumbar puncture ;. area increased signal ;. weighting noted right cerebellar peduncle ;. enhanced ;. gadolinium ;. white matter lesions corona radiata per magnetic resonance imaging ;. multiple temperature spikes ;. enterobacter species per sputum culture ;. broad spectrum antibiotics ;. right vocal cord paralysis per nasopharyngeal endoscopy ;. acute respiratory arrest ;. intubation ;. extubation required one hour ;. chest radiograph consistent ;. new bilateral aspiration pneumonia ;. admission stereotatic biopsy pontine lesion ;. left gaze paresis anisocoria right cornea decreased sensation bell palsy uvula deviated right ataxia upper extremities ;. consistent ;. right pontine lesion ;. blot negative lymph disease ;. negative rheumatoid factor ;. serum rapid plasma reagin positive ;. broad spectrum antibiotics ;. pulmonary infiltrates per chest radiograph ;. anemia ;. small left pleural effusion sonography ;. atelectasis pleural effusion negative lymphadenopathy negative definite masses per computerized tomography ;. extensive necrosis ;. lymphocytes atypical poorly preserved suggestive negative diagnostic small cell malignant neoplasm per nervous system sterotactic needle aspiration ;. necrotic tissue cannot determine specimen represents necrotic brain abscess tumor per pons needle biopsy ;. steroid therapy ;. tracheostomy ;. mechanical ventilation ;. hypotensive episode responsive fluid resuscitation ;. feeding tube ;. heme positive loose stools ;. conjunctivitis treated ;. topical gentamicin ;. right gaze palsy ;. leukocytosis ;. percutaneous endoscopic gastrostomy tube placement ;. elevated cerebrospinal fluid glucose per lumbar puncture ;. extremely atypical ;. background mononuclear per cerebrospinal fluid analysis ;. left subclavian venous line ;. hypotensive episode responsive fluid resuscitation ;. increasing bilateral atelectasis versus infiltrates per chest radiography ;. antibiotic therapy ;. enterobacter per sputum culture ;. stable ring enhancing lesions posterior pons decreasing cortical edema exam less distortion fourth ventricle per magnetic resonance imaging study ;. diarrhea ;. positive assay clostridium difficile toxin ;. weaning ventilator ;. pulmonary toilet ;. supraventricular tachycardia per electrocardiogram responsive verapamil ;. recurrent atelectasis left lower lobe per chest radiograph ;. continuous positive airway pressure maintain airway ;. empiric flagyl ;. right subclavian line ;. maltophilia per sputum culture enterobacter ;. enterococcus ;. per urine culture ;. cardiopulmonary arrest ;. successful cardiopulmonary resuscitation ;. coma score ;. neurological exam consistent ;. brain death ;. heparin ;. lidocaine pressor agents ;. atrial tachycardia ;. intermittent atrial flutter fibrillation per electrocardiogram ;. increased arterial alveolar oxygen gradient ;. burst suppression pattern consistent ;. severe anoxic brain injury per electroencephalogram ;. negative resuscitate status ;. death ;. well differentiated primary cns lymphoma ;. associated hemorrhage necrosis right inferior cerebellar peduncle brain ;. severe ischemic ;. anoxic ;. encephalopathy cerebral cortex cerebellum brain ;. lacunar infarcts midbrain putamen brain ;. adenoma right kidney ;. acute chronic pancreatitis pancreas ;. chronic passive congestion intrahepatic cholestasis steatosis liver ;. organizing pneumonia right left lower lobes lung ;. focal active pneumonitis lungs ;. scattered cytomegalovirus intranuclear inclusions ;. organized thromboemboli lung ;. leiomyomas stomach esophagus ;. congestion edema lungs ;. weight gms ;. calcified granulomas ;. greatest diameter ;. lower lobe left lung ;. mild atherosclerosis left anterior descending right coronary arteries heart ;. cardiomegaly ;. left ventricular hypertrophy heart ;. fatty infiltration right ventricle heart ;. atherosclerotic plaque ;. stenosis superior mesenteric artery ;. moderate complicated atherosclerosis aorta ;. mild atherosclerosis pulmonary artery ;. degenerative joint disease vertebra ;. hemorrhagic urethritis cystitis urinary bladder ;. hematomas rib fractures anterior chest wall thorax ;. cardiopulmonary resuscitation ;. ulcer gastroesophageal junction ;. cytomegalovirus inclusions underlying endothelium ;. diverticulosis colon ;. tracheostomy tube trachea ;. heberdeen nodes nodes radial deviation distal interphalangeal phalanges hands ;. mild pedal edema ;. surgical absence uterus ovaries ;. hysterectomy
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymemomtooo
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Member # 5396
posted
Suicide is a choice, but not a good option. Many of you have heard some of our story about our daughter that went misdiagnosed and untreated for years. Many of the duck stories you all have dealt with.
Her Lyme or Bartonella caused encephalitis. We had months of nightly out of her mind episodes that were very dangerous. She chose suicide as her way out and tried this at least 16 times. I am not talking cries for help. I am talking legitimate attempts, many of which should have been successful.
Thank God she has lived thru it and now has a life and friends, including a boy friend, and reasons to live. But at the time, she was in such dispair and the earlier Drs had caused her to loose trust in any hope or future. So she had tried to end it all. Again, thank God she was not successful.
So there is hope. She is not 100% and her drs from a brain damaged clinic are not promising 100% but she has a future now and recently told someone that the depression and suicide attempts were all in the distant past. She no longer has the anger or rage that was the norm.
Her spect scans were not very good. She has a lot of hypoperfusion and even a missing chunk of the frontal lobe but she is making great strides. She was able to learn to drive and pass her test and is now thinking she may have enough of her memory back to take a college class.
The complication is her diabetes. She still struggles to get it in control and the diets, have raised her cholesterol. So that is a concern. But I do not think anyone should loose hope. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Peacesoul
Unregistered
posted
quote:Originally posted by Lymetoo: My parents basically died of untreated Lyme. They lived to be 77 and 81. Not a happy last 10-15 yrs of their lives.
Thank God neither had severe pain issues.
PS..I believe they each had Lyme for 30-40 yrs before dying.
did an autopsy confirm they had lyme?
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Lymemomtoo! I hadn't heard the turn for the better with your daughter. Last I heard she was in a very bad place.
I'm soo glad that she is doing better.
Would you please let me know (PM me or post) what medications your daughter took to come out of the darkness?
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